The Hunger Games, Parkinson's Style

For most of my life, I woke up hungry. It didn't matter if I ate a large meal right before I went to sleep. I'd still wake up hungry. There was never an argument about who got to use the bathroom first; because I was going to eat before I did anything else. If I could have figured out a way to have my bowl of cereal with the cold milk in it on my nightstand, I would have gobbled it down before I even climbed out of bed. I always ate within ten minutes of getting up. Always. 

Cereal on nightstand

Then came my Parkinson's diagnosis and a carbidopa-levodopa (Sinemet) prescription that needed to be taken as soon as I woke up AND on an empty stomach. The medication made me feel a bit queasy so my cereal got delayed by an hour and I lost a few pounds.

A few years later, I started taking a dopamine agonist along with the Sinemet. Soon after, I found I was hungry for sweets and I gained a few pounds.

Then I had my DBS surgery and stopped taking the agonist and my hunger for sweets slowly disappeared. However, I kept gaining weight. How much? Almost 15 pounds!    

Prior to having the DBS surgery, I heard stories from others that weight gain afterward was common. My Parkinson's specialist confirmed this phenomena, but didn't know the exact reason.

Then I realized that I was NOT waking up hungry. In fact, I never felt hungry. I was eating because my Wonderful Hubby would say it was time to eat. If I had extra milk in my cereal bowl, I'd add more cereal, but not because I was hungry. Instead of eating a few potato chips, I would eat the whole bag but not because I was hungry. I'd just keep putting more servings on my plate until everything was gone. Not only did I not feel hungry, I wasn't ever feeling full either. No wonder I was gaining weight! The part of my brain controlling hunger and fullness wasn't working correctly. 

Was the DBS to blame? Maybe? 

I had to do something. I started to control my portions. No extra cereal for breakfast. I count out my potato chips. I allow myself one low calorie healthy evening snack, usually oatmeal or a frozen fruit bar. I am now back down to my pre-surgery weight and I'm still never hungry. 

Looks like I won the Parkinson's Hunger Game! 

PS Has anyone else with DBS experienced the same thing? 

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It's a Boy, It's a Girl, NO it's ......

We get back to our hotel and I call the hospital and ask for the Pathology department. A woman answers and I ask about getting the IPG they removed from me earlier. She says this is the lab and I don't know what you are talking about. I thought about saying 'Chocolate or Yellow Lab', but I just ask if she can transfer me to Pathology. She says yes.

"Pathology, this in Ingrid." 

Hi, Ingrid. I'm Beverly Ribaudo, I just had surgery and I'd like to have the IPG they removed from me. I have my medical record number, if you need it.

"Okay?? You want what?"

It's a small chunk of metal, similar to a pacemaker. The surgeon, Dr. Norton said it's okay if I take it home with me.

"Okay, let me see if we have it. What's your date of birth? I found it. When are you leaving the hospital?"

It was outpatient surgery, I'm already back at the hotel. We go back to Yuma tomorrow.

"Let me see how quickly we can process it. It might be tomorrow morning before I can get one of our Pathology Doctors to sign off on it. May I have your phone number?"

Thank you Ingrid.

I am hungry. There's a McDonald's across the street from the hotel, so Wonderful Hubby walks over and gets us burgers and fries. After we eat, we decide to take a nap. I have no pain, but take a Tylenol tablet just in case. I am just dozing off when...

The phone rings, it's Ingrid. My 'specimen' is ready to be picked up. She says I'm to go to the Maternity, Labor & Delivery entrance and then call her. She says she's there until 5:30pm. I tell her I will be there in an hour or so (I really NEED that nap.)

After my nap, we drive back to the hospital and find the Maternity entrance. We are the only people who aren't carrying balloons, gifts or flowers. Once inside, I call Ingrid and she comes to meet us. We follow her down hallways and through an unmarked door and she goes and gets a form for me to sign and hands me a brown paper bag.

My IPG baby 

I asked how she managed to get it done so quickly. She said she just asked the Doctor if he could rush it and he said yes. Then she says she was almost born in Yuma. Her Dad was military and he was stationed in Yuma, but her Mom decided to drive to San Diego to have her baby.  

Ingrid asked me what I was going to do with it?

With as serious a face as I could manage, I said 
"Sell it on eBay, of course." Then I started giggling.

I took a peek inside my paper bag and she walked us back out to Maternity. I felt silly carrying a paper bag when everyone else was holding babies. 

YumaBev's specimen in sealed container

It's a boy, it's a girl, no it's.............an IPG! 

Yes, this is the actual IPG that has been inside me since October 25, 2012. That's a LONG gestation period. I think I will refer to "it" as a she. Why? Because a he would have quit working years ago!

Activa PC "Pretty Cute"

Oh my, these Parkinson's Humor blog stories are almost writing themselves.

We stopped at Subway and picked up some sandwiches on the way back to the hotel. 

I'm still in no pain. Tonight we watched Grumpier Old Men on TV and laughed some more. 

June 13th, Surgery Day

Warning: Graphic surgical photo included. 

We arrive at the Tucson Medical Center at 8:30am and get in the Valet Parking line. The attendant arrives and we head inside. We go up to the outpatient surgery floor, I get checked in and pay my co-pay. The hospital wants their money before surgery. I no sooner get done and my name is being called, so we head back to pre-op.

Nurse Esther gives me the designer one-size-fits-absolutely-no-one gown and says take off everything and put it in the bag, EVERYTHING. She pulls the privacy curtain and I comply.

YumaBev ready for surgery

A few minutes later, a fellow comes in and says "I'm the lab guy."

Without missing a beat, Wonderful Hubby says "Chocolate or Yellow Lab?" 

The labs guy starts laughing, says he's never heard that one before.


A few minutes later, Joey the Medtronic Rep comes in. He checks my current settings and will make sure the new IPG is set the exact same way. He says he'll see me in the OR (operating room) and leaves.


Dr. Norton pokes his head around the curtain. He's wearing multiple surgical masks and gives Hubby a fist bump and me a thumbs up. I ask how he's feeling. He says the cold came on quickly, but he took some Nyquil last night and is feeling well enough to do my battery change but cancelled the brain drill and generator placement surgeries scheduled prior to me. I thanked him. He said it's okay, I can't see you having to drive all the way over here again. He marked an X on my right shoulder (hospital rules, he mumbled) and listened to my heart and lungs. 

I asked him if I can have the old IPG that they are removing? He said he'd ask, but he didn't see why not, after all, you paid for it. 

He said Dr. Robin Kloth, the anesthesiologist who did my original surgeries will be in to see me soon. I'm glad. I like Dr. Kloth, she's nice and wears colorful shoes. Dr. Norton leaves. 


A few minutes later, a man comes in. "I'm Dr. Offerdahl, anesthesiologist. Dr. Kloth is in another surgery, so I will be filling in. Is that okay?" 

Do you have colorful shoes?

He looks down and says just boring brown.

How about colorful socks?

Looks down again and says no, but at least they match today. I've been known to wear one white and one dark. 

I like this guy's sense of humor but I find it funny that he had to look to see what color shoes he had on. 

I tell Dr. Offerdahl about my adhesive allergies and ask him to get the EKG pads off me as soon as possible. I also tell him that I want to be as wide awake as possible so I can blog about it. He says how about I give you just a bit of Propofol when Norton is doing the painful numbing shots? Then I will wake you right up again. I say okay.


I kiss Wonderful Hubby goodbye and Nurse Esther takes him out to the waiting area. 

YumaBev ready to go

Dr. Offerdahl says "I'll give you a shot of whiskey when we get in the OR." 

I say I prefer tequila. 

"Tequila?" he says.

Jose Cuervo Light Peach Tequila, please.

"Wow, you're exact aren't you!" 

And off we go. As he is wheeling me down hallways and around corners, he keeps bumping the gurney into the walls.

Turkey or Jack? I say.

"What?"

Wild Turkey or Jack Daniels? I say. Which did you have for breakfast, because you're driving like you are drunk! 

He laughs. "This surgery should be interesting."

We get to the OR, they slide me over on the surgical table, tuck my arms in, give me a warm blanket and an oxygen mask.

Dr. Norton says "Dr. Kloth, your voice is much lower and you've gained weight." I pipe in and say "and you have boring shoes." We are all laughing. 

Poor Dr. Offerdahl, he must think we're all nuts.

As Dr. Norton is doing his thing, he tells the OR nurse to figure out how to get me the IPG he removes. He's telling them about my blog and how I kept the drill bit he used on me during my DBS brain surgery six years ago. I say "I wish we could Live Stream this on Facebook. I want to see what you are doing." 

YumaBev's actual surgical site

I ask Dr. Norton if he ever plans to retire? (he's 79) His reply:

"No, I will just keel over during surgery.
Dr. Offerdahl will try to revive me.
He will be unsuccessful.
My estate will then sue him.
And he will end up living in his car."

Dr. Offerdahl says, "I'm not filling in for Dr. Kloth anymore."

I'm laughing so hard that it's difficult to stay still. 

I can feel the sensation of Dr. Norton suturing me. There's no pain at all. He says he's done and going to find my hubby. I ask Joey to take a picture of Dr. Norton and me. Two other male voices chime in and say "We want to be in the picture, too!"

(L-R) OR nurse Chris, YumaBev, Dr Offerdahl, Dr Norton

And we were done. They slid me back on the gurney, wheeled me to recovery, Dr. Offerdahl said this was the silliest surgery he had done and he disappeared. Wonderful Hubby came in. A nurse went over the post-op care sheet with us. Another person said I should call pathology later because they have the IPG in their possession.

Joey came in to make sure my new device was working properly. A nurse sent Hubby down to get the car from Valet and another nurse helped me get dressed. They wheeled me down to the car and Hubby drove us back to the hotel. It wasn't even Noon. 

Looks like the 13th wasn't a bad day for surgery after all.

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I Could Have Waited...

I could have waited to schedule my DBS for Parkinson's Medtronic IPG replacement surgery. My battery was still at 2.57V and it might be months before it dropped to 2.20V and stopped working. Then again, it might drop really fast. It's the unpredictability that bothered me. 

Back in January of 2019, when I realized it would need to be replaced soon, I would have been thrilled if "soon" was in June or July. Why? The days are longer. You see, Wonderful Hubby would have to drive me back to our hotel room after surgery, and he can't see to drive in the dark. If I could just hold out until mid-June, we'd be okay. 

I was getting tired of putting off any kind of travel or vacation plans and tired of checking my voltage level daily. So, I got ahold of Vanessa, Dr. Norton's assistant and asked if anything was available mid-June or later. She said how about Thursday, June 13th? I could have the Noon time slot and should be out of there by late afternoon. June 13th?? Well, at least it wasn't Friday the 13th. I said okay. 

It's now June 12th, we'd driven over from Yuma earlier (240 miles,) visited our friend Mr Brooks in the Tucson VA hospital, filled up the gas tank in our car, had a early dinner and now we were relaxing in our room at the Varsity Club Resort in Tucson. Believe it or not, we got a one-bedroom suite at a better rate than the other not-as-nice hotels near Tucson Medical Center. 

Wonderful Hubby relaxing.

We were watching the movie Grumpy Old Men on TV. I'd forgotten how humorous this movie was. I was laughing so hard, I almost wet my pants. 

We went to bed early, and had the alarm set for 8am, since I had to be at the hospital at 10am for replacement surgery at Noon. I was sleeping really well, until...my cell phone started playing music very early in the morning. 

I have different ringtones for my various groups of contacts: Kodachrome for Camera Club, Friends in Low Places for neighbors, Little Red Corvette for Corvette Club, Lime In The Coconut for Medical and Shake, Shake, Shake Your Booty for Parkies.

My phone on the nightstand next to me was playing Shake, Shake, Shake. I groggily answered hello.

"Hi, this is Stephanie, have you left yet?"

What? I mumbled.

"This is Stephanie, from Tucson Medical Center, have you left Yuma yet?"

What?? Huh?

Slower and more clearly "This is Stephanie, from Tucson Medical Center, Dr. Norton is sick, he's canceling all of todays surgeries. Have you already left Yuma to come to Tucson? He wanted me to catch you before you drove all the way over here. That's why I'm calling you so early. Have you left Yuma yet?"

Dr. Norton sick!? Now, I'm wide awake. Hi Stephanie, we are already in Tucson, at the hotel just down the street from the hospital. We came yesterday. What's wrong with Dr. Norton, is he okay?

"You are already here? Can I call you back in a few minutes?" 

Sure, no problem.

Phone rings five minutes later. "Hi Bev, I just talked to Dr. Norton, since you are already here and it's just a battery change, he's going to go ahead and do your surgery. He cancelled the others. He came down with a bad cold yesterday evening. He said he'd double mask, so you won't get sick. Can you be at the hospital at 9am, he'll do you at 10am?"

Sure, I said, by the way Stephanie, what time is it?

"5:45 she said."

I was beginning to wonder if I made a mistake choosing the 13th? And I was worried about Dr. Norton. But we got up and I got ready. I had planned on putting my hair in a single braid. I figured it would keep it out of the way, but my fingers wouldn't cooperate. I went downstairs to the front desk, hoping maybe there'd be a lady on duty, but there was a man. I checked the fitness room, just men. I went back to the room and asked Wonderful Hubby if he could braid my hair. 

He said he'd give it a try.

Who knew Hubby could braid hair?

The phone rings at 8am, it's a Tucson number. It's the hospital calling, they want me there as soon as possible, so Hubby eats a quick breakfast, and I drive us there. 

Maybe I should have waited......

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The Energeezer Parkie Will Need a New Battery...Soon

Several years ago, I wrote a story where I used rechargeable batteries as a way to describe what life is like with Parkinson's disease. Using my warped sense of humor, I changed the famous Energizer Bunny to the Energeezer Parkie. It thought it was a pretty good analogy. Once I had DBS surgery, my 'Parkie' battery was pretty close to 100% every day. 

I knew my Medtronic Activa-PC DBS generator battery would need to be replaced some day. The average lifespan is 3 to 5 years. Mine was six years old in October 2018. 

At the beginning of 2016, my battery level was 2.97v. At the beginning of 2017, my battery level was at 2.91v. At the beginning of 2018 it was 2.85v. It was averaging a drop of .06v a year, so I figured I'd have several more years until it reached the ERI (Elective Replacement Indicated) warning you get when it drops to 2.61v, I was wrong.

I had been in the habit of checking my battery level using my patient programmer about every three months. April was 2.83v and July was 2.81v, right on target. So you can imagine my surprise when I checked it at the end of October 2018 and saw that it was down to 2.76v.  

I started checking it monthly, then weekly and now daily and I wasn't liking what I was seeing. The amount of time between voltage drops was decreasing. 

As of today, January 21, 2019, it's now at 2.69v. That's a drop of .07v in less than three months. If the voltage drop continues to accelerate, I will get the ERI warning in a few months!!!

Jan 2019, battery at 2.69v

My neurosurgeon, Dr. Norton is in the same office as Dr. Bradley, my Movement Disorder Specialist and I have an appointment with her in mid-March. I have already contacted Norton's assistant because I didn't want to wait until March and then find out that he's going to be on vacation or something else that would make him unavailable. Norton's assistant said they could get me on his surgery schedule within two weeks, but I should call if I get the ERI warning before my March appointment. 

Looks like the Energeezer Parkie will soon be getting  a brand new generator. 

The generator won't stop working when the ERI warning appears. There's a built in cushion of time, it doesn't stop working until it gets to 2.20v.

If you have a Medtronic Activa DBS generator and don't know how to check it, click on the link above. You don't want it to suddenly stop working.

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Jury Duty with Parkinson's Disease

The notice arrived in early May. It was a juror questionnaire form, asking me to respond online. I could have asked one of my doctors to write me an excuse but I did not. I think I would like to serve on a jury. I never have. The notice said I may be called any time after July 1st.

On August 11th, I get my Official Summons in the mail. I am to report at 8:15 AM on August 20th. I am a tad bit excited. Maybe it will be a murder trail, or a bank robbery or something else interesting. 

Here comes the Judge...Jury Duty Summons

Soon I realize that I will have to get up early enough to take my thyroid pill on an empty stomach, wait 30 minutes to eat my breakfast, take my Parkinson's disease pill and get dressed in business casual type clothes. My typical hot weather attire of shorts and tank tops are not allowed.  

I also hadn't factored in the thirty minute drive down there or what I was going to do about my second meal of the day. On a normal day, I eat breakfast around 10 AM and then Wonderful Husband cooks us a big meal which we eat about 2 PM and at night we have a salad, or cheese, or snack on some fruit. All of a sudden, Jury Duty was losing its humorous appeal.

The morning comes, I get up when the alarm goes off at 6 AM, get ready, and pack a peanut butter sandwich and fill my Yeti cup with ice and water. Since Wonderful Hubby and I are together 98% of the time, we only have one cell phone, so I leave it at home with him. The other 2% of the time, one of us is using the bathroom (hee-hee.) I park in the courthouse garage, grab my sweater (in case it's cold in court) and walk to the entrance. It's 8 AM and already 90° outside. 

Yuma County Courthouse

I walk through the entrance doors and feel like I'm at the airport screening. People are taking off their belts, watches and emptying their pockets. Bags, briefcases and purses go through the scanner and people walk through the metal detector. I stand to the side and tell them I have a pace-maker type device. It's easier than trying to explain my DBS implant. I get the hand wand treatment instead.

I show my ID and sit down in a large room with about 250 other people. There are TV screens everywhere, all tuned to a channel devoted to houses; remodeling, selling or buying bigger homes. After 10 minutes of that, I am bored, so I people watch instead. There are twice as many men than women and more in their 40's than in their 20's. I see one obviously very pregnant lady with a toddler in tow, two people on crutches and only a few with gray hair. There are quite a few with tattoos, piercings and bright hair colors of blue, green or purple.

A bailiff comes in, asks everyone to stand and introduces the Judge. The Judge has us all raise our right hands and puts us all under oath. He then tells us it will be a medical malpractice civil trial (yuck) and they hand out forms for us to fill out. After we fill them out, we can leave. If we don't hear anything, we are to report on the date listed on the form.

I realize now that I have a problem, my handwriting is so terrible, I can't even read it myself. Most of the pages have yes or no boxes to check, so that's okay. Then there is a page with the trial dates listed; three whole weeks in September and early October. They want to know if I am unavailable on any of those dates and if so, why. I don't have our cell phone with the calendar on it, so I don't have a clue what may be scheduled a month from now. I can't remember what I'm doing tomorrow or next week without checking my calendar! 

I see the first Monday in October is listed and realize that's our Parkinson Support Group meeting day. I manage to scribble why I can't serve on that date. I also scribble that due to Parkinson's, I'm not sure I could be in court every day, from 8 to 5 for three weeks in a row. By the time I finally get the form done, all of the other 250 people are in a line to leave. I am the very last person to hand my form in. I ask the bailiff to make sure he can read my Parkinson's scribble. It's only 10 AM and I'm on my way home and I am completely exhausted. What was I thinking?? I should have asked my doctor for a medical excuse. There's a huge difference between being at home all day and being in court all day. 

Once I get home and check my calendar, I find out  my step-daughter is coming to visit, I have a Doctors appointment and a teleconference all scheduled during those three weeks of trial dates. All I can do is wait and see. If I have to go, I will try to explain to the Judge why I didn't fill out the form when I was there. 

The phone rings a week prior to the trial start date, I don't recognize the number, so when the man at the other end begins to mumble quickly, I just hung up. I did a Google search on the number and realized it was the Court. I called back and was told that I did NOT need to report. Problem solved. Whew!

As much as I want to fulfill my civic duty and serve on a Jury, the reality is I can not do it, either physically or mentally. I would not be able to show up on time, for multiple days in a row and be able to stay alert. I would not be able to take handwritten notes and I'm no longer capable of remembering complex details. When it came to deliberating, I would not be able to express my thoughts clearly and would probably come across as being drunk, stupid or both. 

Looks like the Justice system will have to get along without me and that's okay. A criminal trial might have been interesting. A medical malpractice trial would have been sad and possibly made me angry. Neither would have been funny and if it doesn't involve humor, I'm okay with missing out. 

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Driving Mr. Brooks

It's no secret that I like to drive. Even though I have had Parkinson's disease symptoms for well over 20 years, thanks to Medtronic DBS, I am still a good driver.

Mr. Brooks is a friend of ours. We met him when he joined the Corvette Club several years ago. He's been single all of his 85 years and he was an only child, so he has no family. He also has a great sense of humor. When asked if he has any children, he winks and says, none that I know of. 

Mr. Brooks with arm in sling at Corvette Club dinner

Mr. Brooks was a rescue crewman in the Navy, which meant he spent most of his Naval career flying high in the air in a helicopter. Just prior to his retirement, the helicopter he was in, crashed. Over the years, he's had replacement parts put in his ankles, knees and shoulders, all damaged in the crash. After a 30-year military career, he went to work as a policeman at the US Army Proving Ground here in Yuma until he totally retired about 20 years ago. 

In the years that we have known Mr. Brooks, he's had to have all of his replacement joints replaced again. Usually, Mr. Brooks would drive himself to the Veterans Administration (VA) Hospital in Tucson, Arizona (250 miles away) and they would replace the part, then keep him there until he was well enough to drive himself back home. It seems like he's had something in a brace, cast or sling the entire time we have known him. Sometimes we would pick him up in my car and take him to the Corvette Club functions, so he was used to my driving. 

YumaBev's Sonic

In the Fall of 2016, Mr. Brooks was having a problem with his left ankle and it wasn't something the VA could fix. It would have to be outsourced, and he would need a driver. He asked me if I would be willing to drive him to a hospital in Tucson and drive him back home the next day. He would gladly pay for my hotel room. My Wonderful Husband and I said yes, as long as his surgery date didn't interfere with my own Tucson appointments. 

As it turned out, his surgery was scheduled for the same day as my appointment with Dr. Bradley. He needed to be at his hospital by 5 AM on Monday and my appointment wasn't until 1 PM. I was also scheduled to speak to the University of Arizona Medical School students early Tuesday morning and he wouldn't be released before noon, so all would work out just fine.

There was a small problem though. It was Thanksgiving weekend and there were no reasonably priced hotels to be found in Tucson and we'd need two rooms on Sunday night and one for Monday night. I contacted my Parkie friends Ken and Lisa and asked if all three of us could please stay at their Tucson home. I knew they were out of town for the holiday and Wonderful Hubby and I had stayed at their house in the past.

Luckily, they said yes. So, we packed our bags and I drove my car into Yuma to pick up Mr. Brooks, and we headed for Tucson. We got the keys to our friends house from their neighbor and then drove the route to hospital. I didn't want to be trying to find my way in the early morning darkness. We ate what Mr. Brooks jokingly referred to as his last supper, watched some football on TV and retired to our rooms early. 

I set the alarm for 4 AM and woke to heavy rain and very cold temperatures. Fortunately, we had parked in the garage. My Wonderful Husband hates hospitals, so I left him sleeping. Mr. Brooks was ready early, so I drove slowly to the hospital. I was glad we did a trial run in the daylight the day before. Everything looked different in the darkness and rain. I stayed with Mr. Brooks until they hauled him away on a gurney, made sure the staff had my cell phone number and that I had permission to check on him. Then I drove back to the house and went back to sleep.

After my appointment with my Parkinson's specialist and a quick chat with my DBS neurosurgeon Dr. Norton (they work at the same place), Wonderful Hubby and I went to see Mr. Brooks at his hospital. We walked into his room to find him crawling across the floor from the bathroom. He wasn't able to reach the nurse call button, the urinal or his crutches and he said he had to go. I scolded him and we called a nurse to help get him back in bed. And then I scolded the nursing staff as well. We stayed until they brought him dinner and then headed back to the house, stopping for something to eat on the way.

Tuesday morning, we returned the house keys to the neighbor. I went to speak to the Medical School students, then we drove to the hospital, picked up Mr. Brooks and headed back to Yuma. We made sure he was settled in at his house and came home.

This was the first of many trips to Tucson or Phoenix that I would make with Mr. Brooks. After that first trip, Mr. Brooks would drive one of his cars (he has several) to my house and then hand me the keys and I'd drive the rest of the way. Mr. Brooks always tells the staff at the Doctors office or Hospital that I'm his driver. "Doesn't everyone have a pretty blonde chauffeur?" Mr. Brooks says. When they ask me who I REALLY am, I say I'm his chauffeur. 

This is one of Mr. Brooks cars 

As we are cruising along, Mr. Brooks tells stories about his Naval career. He was part of the ocean pick-up crew for one of the Apollo space missions. He did mountain rescues in the Alps and while there, he travelled all over Europe in an Austin-Healey. He's lived an adventurous life and is still enjoying every day.

Mr. Brooks newest car, and YES, I have driven it too!

I know he must be in pain every day and yet he never complains. We just got back from an overnight stay for another early morning surgery on his left ankle. They had to take a screw out because it was bulging through the side of his calf. This was the third time Mr. Brooks had a 'Screw loose!' as he likes to tell people. I hope this is the last of his replace the replacements surgery and that he's finally done.   

It takes a lot of planning to make these trips. I make sure I know exactly where I am going and memorize alternate routes, just in case. I'm glad I can still drive Mr. Brooks. 


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YumaBev DBS - 3 Years Later

October 18, 2015 is THREE years since Dr. Norton made me a member of the exclusive "Yes, I do have holes in my head" club. So, the big question is...How I am doing?

First, the positives from my DBS for Parkinson's disease surgery:

My sense of humor is still intact! My witty quips take a lot longer to find their way from my brain to my mouth, but sometimes the delay and my slurred speech makes them funnier. 

My main Parkinson's disease motor symptoms are under control: Tremor is gone, unless I'm under extreme stress. Slowness of movement (bradykinesia) only happens when I am very tired. Rigidity only happens if I stay in the same position too long or get tired.  

I am still taking carbi/levodopa medicine. Prior to surgery, I was taking five or six 25/100's per day. Now I take a total of two, cut into halves, primarily for speech and that ugly upper lip curling thing.

Voltages are low

My DBS settings are very low, so my generator battery should last at least five years.

Battery  level is good

The small amount of hair they shaved off has just about caught up to my overall length, but my Wonderful Husband (who cuts my hair) still hasn't got used to the weird bumps on the top of my head and behind my right ear. They really do feel like I'm about to sprout horns or antennae. 

Just a few inches shorter on one side

I am sleeping well and an average of 8 hours a night. I know I must dream, and sometimes try to remember them as I waken, but by the time I get out of bed, the memory is gone completely.

On a secondary health note, my third post breast cancer mammogram was okay, so that is very good news.

Now for the negatives:

Fatigue is still a problem. It can come on suddenly; with little warning and when it does, I am done. I must stop what I am doing and rest. When it happens, it feels like I'm wearing lead-lined clothing, every part of my body feels heavy. Sleep usually is the best way to fix this problem, so naps are a part of my daily routine. 

Speech: My speech varies between almost normal to unintelligible depending on my medicine cycle and the situation. My mouth just doesn't work right. I drop consonants in the beginning of words or syllables in the middle. For instance "Are you ready for breakfast" may sound like "eryu eady fo eakfass." My Wonderful Husband has become quite adept at deciphering what I am trying to say.

The volume varies as well. The thing I miss most is the loss of inflection and tone. I can speak clearly, if I shout or want to sound like a robot, but it's hard to remember to speak that way ALL the time. And who would want to? 

Give me a microphone, however, such as when I am speaking in public or at our support group meetings and I can force myself to speak clearly. Doing this requires all my brain power and afterwards, I am totally exhausted. I never thought that talking would be such hard work. 

And yes, I know all about the LSVT-LOUD® program, but it's not available locally as outpatient therapy and even if it was, I couldn't afford the co-pays. 

Multitasking: I find I can no longer multitask. I no longer have multiple tabs open on my PC, I must do things one at a time. It takes me longer to figure a 20% tip, when it used to be automatic. I must never leave the stove if I am cooking something. I cannot type a blog story while the TV is on. I have turned the Bluetooth off in my car and now let the phone go to voicemail if I am driving. The built in GPS in my brain is still intact, so I have no trouble finding my way around town or even in big cities. But the radio must be turned off. 

Cognitive issues: My short term memory is worsening. My facial and name recognition, which was never good to begin with, is awful. I run into people who know me and I don't have a clue who they are. They may not even look familiar. This is especially true if I see them out of context (i.e. seeing someone from the support group at the grocery store). That being said, I still know and recognize my close friends and family and I can remember their names and birth dates. The good thing is I can watch a movie that I know I have seen sometime in the past and not remember how it ends. This has made my TV viewing more pleasurable. 

Balance: Braking is still a problem, so I am extra careful stepping off curbs or walking down inclines. The other balance problems are improving with each exercise class I attend. 

The question I get asked the most is...Would I have the DBS surgery again?

My answer is a resounding YES! 

All the negatives listed above may have happened even without the surgery. They can all be part of the normal progression of Parkinson's disease. I know for certain my motor symptoms would definitely be much worse without the surgery. 

Let's let the videos speak for themselves.

Before DBS video:

Three years later video:

To watch all my videos, visit my YouTube channel:
https://www.youtube.com/user/ParkinsonsHumor

DBS: Two Years Ago, I Let Them Drill Holes in my Head

Today is October 18, 2014. Two years ago, I was lying in a hospital bed with a headache. My hair was matted with a combination of surgical disinfectant and blood and I was hooked up to so many monitoring wires, I felt like NASA should be in control.

YumaBev Oct 18, 1012

Dr. Norton had just finished drilling holes in my head and inserting the DBS stems for Part One of my DBS surgery. My Wonderful Husband looked relieved; it had been a nerve wracking wait for him. I was hungry, but my stomach was upset, probably a side effect of the anesthesia. I vaguely remember the nurse bringing me some crackers. 

I remember calling Jim Adams and telling him to go ahead and post on Facebook and Twitter that all had gone well. 

Well, here it is, two years later and what are my results now?

I haven't had a foot cramp since right before the surgery two years ago. I take much less Parkinson's medications and the medication related dyskenisia is gone. I sleep a lot longer. My tremors, what little I had, are pretty much gone. The same can be said about the slowness of movement. If I sit for too long, the rigidity comes back, but quickly disappears. In other words, all that was promised by Medtronic has happened.

Fatigue is a major problem and can come on quite suddenly. My speech has been adversely affected, both in volume and clarity. However, I seem to have no problems when I use a microphone, such as when speaking at our local Parkinson's support group. My upper lip still curls into an ugly sneer.

I have noticed that my balance isn't what it used to be. I do okay walking forward, but climbing steps or bending to pick items up can be a little scary and I often have trouble maintaining my balance when I get up from sitting. We have rearranged the bedroom, so that I have something to grab onto when I get out of bed.

My handwriting has gotten much worse, I can't write anything readable. This makes me frustrated, because I can't even make out a grocery list.

Handwriting before DBS

Handwriting after DBS

I am still having some time and memory problems and get easily distracted. I like to laugh and joke and sometimes I come up with a funny story idea for this blog, but by the time I get to the computer, it is gone. I don't spend as much time online anymore. If I sit at the computer too long, it aggravates a neck/shoulder problem from the cancer surgery. On a positive note, my second, post breast cancer mammogram came back negative, so that's good news! 

I am looking forward to speaking to the Medical School students next month and hope to have more chances to speak to people with Parkinson's as well as educating others about this disease. I'm looking forward to friends and neighbors returning to Yuma for the Winter. Have a Happy Parkie Day!